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Time for a Counter Offensive

At the end of my previous “A VERY GOOD DAY ON THE BATTLE FRONT! (CT SCAN RESULTS ET AL)” post I mentioned that with my good CT scan results: “I’m fighting on one battle line & I won a battle today”. As a direct consequence of that scan, I and my medical team have decided it is now time to open up a new battle line of direct attack.

But first, I need to give some background leading up to that decision – it was not a standard route…….

When I finished my chemotherapy as a Stage IIIC patient in January, 2013 – I was relieved to see that my CT scan was completely clean. Absolutely no evidence of disease (NED). As far as anyone knew I was cured and I entered my new post-cancer life. I stopped eating all junk food, began distance running, began taking supplements that I felt may reduce the chance of recurrence, and I refocused my life on new priorities of Family, Faith & Health. Although I was worried about recurrence (having statistics giving 70% odds of Stage IV cancer coming back can do that to a person!) – I honestly felt the healthiest I had ever felt my entire life.

That all changed 8 short months later in August 2013 with the first signs of recurrence in my next CT scan.

My doctor called with the scan results. Seldom is it a good sign when the Doctor calls. He told me that “there are some enlarged lymph nodes”. Were they cancer? No way of knowing but certainly they were “suspicious”. A PET-CT scan a few weeks later also identified some suspicious small spots in my lungs. Were they cancer? No way of knowing but certainly they were “suspicious”.

My first question: Can we biopsy to confirm they are cancer? Answer: No, they are in too dangerous of a place to surgically biopsy at this time. (In May 2015, they were confirmed CRC by liquid biopsy)

My second question (hint: pay attention to this one): Can we blast the spots with targeted radiation, cook them to a crisp with Radiofrequency Ablation (RFA) or do surgery? Answer: Due to the spots’ locations, surgery is not possible. You shouldn’t go through the risks of RFA to remove the lung spots since there are probably more spots about to appear if you are metastatic.

The Doctor’s Plan of action?Since unsure if cancer,monitor for growth and/or signs of metastatic spread.

My Plan of action?Proceed to hit the PANIC BUTTON and do everything I could think of to fight the presumed cancer (short of chemo). Hope for the best but plan for the worst… Admittedly, inaction is not a strong suit of mine…

What did I do? I scoured the scientific literature and identified everything I could find that met these basic criteria: 1.) Scientifically plausible 2.) A high safety bar (Primum non nocere – First do no harm) 3.) Ideally had human data indicating at least signs of efficacy – but at the very, least signs of efficacy in animal models.

After that initial research period: 1.) I immediately went on a minimal protein primarily vegan diet with a focus on potentially therapeutic foods, under the guidance of an expert dietary MD 2.) I began numerous additional supplements – including some from traditional medicines from Europe, Asia & India – I believe we shouldn’t lightly throw away hundreds/thousands of years of observational/empirical science 3.) I began to take a number of (safe) medicines “off-label” – i.e. medicines not designed to be anti-cancer drugs but in animal and/or preliminary human testing showed potential anti-cancer activity. Importantly, my oncologist was notified of all medicines I took off-label.

As I have mentioned before, as a Stage IV patient – if there is a plausible chance that something could help fight the disease (and it is reasonably safe!) you do it – the upside potential is life, the downside potential goes without saying… All of these activities had zero side effects (well OK, the minimal protein vegan diet had a side effect of me REALLY missing pizza!). My goal was to see if the spots might stop growing and/or spreading without resorting to chemo (which frankly I dreaded returning to). I figured this was a perfect time to try “this experiment” since the spots were tiny & my doctor was not advocating chemo – just monitoring. It was on this day the Mad Scientist was born…

Maybe yes, maybe no… a question that is impossible to answer. For the next 12 months (without chemo), I was scanned every 2-3 months. Something very unexpected happened. Remember when I said that my spots exploded out of nowhere in those first 8 months? And that if cancer, it was expected that they would probably grow quickly & more spots would likewise appear quickly? Here is what the scans showed over the ensuing almost 2 years, including all the time I was simply being monitored without “treatment”:

The lymph nodes have never grown. The lung spots kind of wavered in size but overall did grow very slowly. Because of the slowly growing lung spots, I was declared Stage IV after one year of monitoring and I restarted chemo last Fall (the cocktail I used ended up showing zero obvious impact on any spots).

Now the more interesting thing. Since that first scan in August, 2013. There has been no obvious active metastatic spread! Which was certainly unexpected based upon how fast the existing spots occurred after my 2012 chemo ended, since during most of this monitoring period I was not being “treated”. To have gotten where they are, the spots by definition must have metastatic ability. Is it due to sheer luck or prayers being answered? Certainly possible. Is it due to one or more of my Mad Scientist supplements/medicines/diet impeding spread? No way of ever knowing. But when you’re confronted with unexplained good data, there is an old principle in oncology: “Whatever you’re doing – keep on doing it!”

Related to this, I had an appointment with my oncologist every 2-3 months to go over scan results. I became a very annoying broken record to him.

August 2013: Question: Can we blast the spots with targeted radiation, cook them to a crisp with Radiofrequency Ablation (RFA) or do surgery? Answer: Due to the spots’ locations, surgery is not possible. You shouldn’t go through the risks of RFA to remove the lung spots since there are probably more spots about to appear if you are metastatic.

October 2013: Question: There are no new spots. Can we blast the spots with targeted radiation, cook them to a crisp with Radiofrequency Ablation (RFA) or do surgery? Answer:Due to the spots’ locations, surgery is not possible. You shouldn’t go through the risks of RFA to remove the lung spots since there are probably more spots about to appear if you are metastatic..

{I flew to Boston & received confirmation of this advice at a second opinion trip to the Dana-Farber Cancer Institute (Harvard)}

Then… May 2015: There has been no obvious signs of active metastatic spread for ALMOST 2 YEARS! Can we blast the spots with targeted radiation, cook them to a crisp with Radiofrequency Ablation (RFA) or do surgery?

SSSSSCCCCCRRRRREEEEEEECCHHHHHHH!

Answer: You have a weird cancer. Not only have the lymph nodes not grow but the lung spots have been very slow growing without obvious active spread – even though your spots initially appeared suddenly. Surgery is still not an option but… OK, we can look into doing radiofrequency ablation (RFA) to start blasting away some of those lung spots!

Woo-hoo!! (in my Doctor’s defense, I do have a very weird cancer but this time in a good way 🙂 )

So RFA is the new battle line we are opening up in this war!

So what is RFA? It is “radio frequency ablation”. Briefly, it is a procedure where an interventional radiologist uses CT imaging to guide a thin needle into the lungs squarely aimed at a tumor. Once the needle hits a tumor, high frequency radio waves are produced which heats up the tip of the needle. What does this do to the tumor? Well to use the vernacular, it blasts the shit out of it with heat. For me they’ll be using even higher heat than shown in the figure below to blast the entire tumor masses. We’re not messing around here 😉

I have been wanting to do RFA for a long time & it is finally going to happen on June 25! Why have I been so keen to get RFA done even though it will be non-curative?

1.) My spots right now are pretty indolent (slow growing, not spreading). Unfortunately cancer cells are genetically unstable and they could switch to a more aggressive form at the flip of a genetic switch. I like the thought of getting rid of a Millions of cancer cells available to “luck into” that evolutionary switch.

2.) The problem with using systemic drugs (whether chemo or targeted agents like cetuximab) is that tumors are very heterogeneous (and genetically unstable). Unfortunately there exists in the Universe little things called evolution and natural selection. There are always sub-populations within tumors which are intrinsically resistant to therapy (or become resistant via evolution) and these are then chosen for by natural selection. The end result: you can prolong life with those drugs but invariably you will end up with a harder to treat/aggressive cancer. With RFA, by using brute force (a little miniature thermonuclear bomb!) – the tumors are blasted away in seconds. There is not time for evolution to occur and natural selection has trouble evading thermonuclear warfare!

3.) I am a big believer in immunological approaches to fighting cancer – the size of tumors can really impact the immune system’s ability to fight. So I would love to get rid of the largest ones.

4.) It isn’t something I normally talk about but I have had a continuous background cough since last November. Is it due to my lung tumors? I don’t know but I think it is likely. Although a minor point in the big scheme of things, it would be nice to again be able to laugh with my kids without coughing fits…

The chances of complications are very low (very rarely, the occasional collapsed lung but fighting cancer is not for the faint of heart!). It will require a single hospital night and people normally fully recover very quickly. I laid above some scientific reasons why I have really wanted to do RFA for a long time. At least as important are the emotional reasons. Opening up a new offensive battle line, taking the battle directly to the cancer and hitting it mercilessly with brute force – like it is trying to do to me – feels good. Really good.

June 25, a new battle line will be drawn to expand our offensive to not only win another battle but hopefully to continue to line me up to eventually win the war. And yes, I will continue my Mad Scientist pile o’ supplements, off-label drugs and diet – certainly these have not been proven to be behind my cancer’s weird behavior but as they say in this kind of situation: “Whatever you’re doing, keep on doing it!”

Tom,
I feel dwarfed. You heroic fight is just stunning to anyone who enjoy health and worried with much less serious things in life. Until June 25, we will keep praying and Yes, KEEP GOING, the enemy will not stop you.

I can relate to the experimentation! Kudos for being proactive with your doc. I did the same thing when I did selective internal radiation therapy for my liver. It blasted my tumor and it didn’t come back for 5 years.

Been following your blog for a while. My wife – 44 yrs old – was diagnosed with ALK-driven NSCLC three years ago. 2 years of success with Crizotinib (I believe you did a presentation on that!), recently started the ARIAD trial on AP26113 because of uncontrolled brain mets.

We have some things in common. I’m a medical physicist in radiation oncology (www.coloradocyberknife.com if you want to take a look at my clinic). I’ve been meaning to reach out to you for some time because of the professional connection, but seeing this post, I also wanted to let you know that as a private clinic, we could offer SBRT for those lung mets. We do a lot of self-referral, and without the red tape of a hospital, we can do things a lot faster, without worrying so much about insurance etc.

Although RFA is also excellent, obviously without the carcinogenic risk to healthy lung. That’s great you’ve finally got the opportunity to get rid of those outlier lesions.

Anyway, I’ll leave this reply at that. Would love it if you send me private email.

To begin with, I am sorry to hear that your wife is also facing cancer. Although I have not personally worked on either crizotinib or AP26113, I am quite familiar with ALK driven-NSCLC. Hopefully AP26113 works on her current mets! Thank you for reaching out, I am glad you have enjoyed following my blog. I would love to connect further with you in the future-